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Thursday, 17 November 2011

Researching a New Diagnosis

I like to consider myself an expert patient. I am familiar with the signs and symptoms of my illness, the medications used to treat it (including those that I don't take) and their interactions and side effects. I know about the non-medical and complementary therapies used to treat my illness, and manage my own treatment plan with support from my GP and specialists.

This is the result of many, many years of accumulated research.

But where should you start with a new diagnosis?

I found myself asking that very question a few years ago, when I received a new diagnosis to go alongside the existing ones.

Receiving the diagnosis was a relief, as I knew that something was very wrong, so it was helpful to have a name for it so that I could start to understand. What I found frightening was that I couldn't answer people's questions about this rare condition, couldn't suggest anything to my GP, and felt totally unfamiliar with the new medications used to treat it.

So where did I start?

Get a general overview of the condition:

www.patient.co.uk contains numerous articles about medical conditions, many of them written by doctors and for doctors. This was my starting point for looking up the primary diagnosis, and later, the other diagnoses that came along with the primary one. Get an understanding of how the illness presents, is diagnosed, is treated, and how things might progress in the future. Learn about how the illness affects the normal functioning of your body (and learn about the normal functioning if you don't already know).

Try to steer clear of websites that promise miracle cures, or that promote particular products. What you need at this early stage is thorough, reliable information, which will provide a foundation for your future expertise. The NHS website, eMedicine, and Wikipedia are all relatively reliable, though you may find some of their articles a little light on detail.

Find out more from a patient perspective:

Look for any societies or charities specifically supporting people with your diagnosis. Read their articles and message boards, ask questions and compare other people's experiences with your own. Think of this as adding colour and texture to the basic understanding that you gained from the first step above.

Medical websites can give facts and figures, but you have an advantage (?!) in that you know what it is like to actually have this condition and live with it. Reading about acid reflux, for example, without ever experiencing it, is like reading about the taste of a peach without ever eating one.

Look for published research:

PubMed was my next port of call, to see what research had been published about my condition. This is a quick step, just to see if there is anything new or on the horizon for your condition. You may not be able to access full text of research papers, but you can always ask your GP or specialist to print off articles for you, or just ask them what they think about a particular piece of research.

Find out more about drug treatments:

Patient information leaflets provided with any prescribed or over-the-counter medication are helpful. Make sure you read them, even if you don't remember everything they say. It's important to know if a new symptom could be a side-effect of medication or an interaction with another medication that you take. The BNF (British National Formulary) has more details about doses, adverse effects and interactions. Your pharmacist will have a copy and might let you borrow or keep an old edition if they have one knocking around. Try to understand what each medication does and why it has been prescribed.

Complementary and lifestyle measures:

This is probably the most difficult topic to research, as results are often anecdotal. Ask questions of other people with your condition, your GP, your therapists and specialists. Talk to complementary therapists (make sure they're registered with a recognised governing body, and get a personal recommendation if possible). Remember that your mind is very important in all of this - relaxation and meditation may be a valuable part of your treatment, along with more physical interventions, such as acupuncture, yoga, diet and exercise, osteopathy, etc. Most of all, use your common sense. Don't stop taking prescribed medications without consulting your GP, or try something that your gut tells you is risky.

Finally:

Try to keep track of your symptoms - what makes them better or worse, what effects (good and bad) you notice from the medicationyou are prescribed and from any lifestyle changes you make. Take every opportunity you can to learn more about your condition, participating in teaching for medical students or expert patient programmes, if they're offered to you.

This is your life; your medical condition, and you can take charge. You are the only one who can see the whole big picture of your body and how it's affected by various things (illness, food, exercise, medication, etc.), so you have the right to be the boss of your medical team. Use other people's expertise in addition to your own, but don't forget that you are the leader and the core of the team. This is your life, and you have a vested interest in living it to the very best of your ability.

This post was written as part of NHBPM - 30 health posts in 30 days: http://bit.ly/vU0g9J

About Me

Despite my best efforts, I still spend about 1/3 of my time in hospital (not including outpatient appointments). I have a genetic disorder that affects my joints, my digestive system, my autonomic nervous system (control of blood pressure, heart rate, temperature, and other 'automatic' functions) and hearing. I also have severe asthma. The combination of these things means that I'm almost always exhausted and in pain - this is how I live my life. There is no cure that will restore my quality of life to 'normal', so I have to find quality in what I have. I like things to be organised (makes life easier), love to be surrounded by beautiful things, enjoy knitting, reading and baking. As with all things, however, nothing is perfect, and we all make compromises as we try to make the best of what we have.